I do have systemic sine scleroderma, Sjogren’s and ILD. I don’t recall being so low and I have had a lot of labs. I always thought our WBC was elevated with autoimmune diseases. I’m going to check out the link. I can ask my dr but the appt is a month away and I am curious.

My lips are smaller and I have sine scleroderma. Several doctors have noticed but I really don’t know if it is due to ageing or scleroderma. Dentist comment that my mouth is small and recently my GI Dr mentioned the mouth puckering up.

How often do you all get upper endoscopies and or colonoscopies?
I know after age 50 a lot of people get the latter, but for scleroderma purposes how often does your Dr ask you to get them? I'm way over due on both and really don't want to get either. I've had them and don't think they are a big deal but I just don't want the expense or to deal with it but I know I should.

Thank you! I really think it's nothing since my ECHO was normal. I just worry like crazy and it's been two years since I've had one. Hopefully I won't need the right heart catheterization. I've had one and feel they are a piece of cake, but time and money. If anyone else has anything to add, please do so. I don't like having it dilated and assume it could be worse now. Thanks. ❤️

Hi All!
My last CT scan shows a dilated pulmonary artery. In 2005 it was 30mm and in 2015 it was 35mm. At the time I also had an ECHO which was unremarkable.
I am preparing for an upcoming appointment, with the same tests, and wanted to see what you all think.
How concerned should I be? I have systemic sine sclerosis with ILD.
Thank you.

Has anyone else had nerve damage from having their labs drawn? Last week the phlebotomist hit a nerve while attempting to draw blood and now I have painful symptoms of nerve damage. I'm seeing a neurologist in a few weeks. I guess this could be classified as a complication of scleroderma ;). I just hope the nerve heals.

Hello All,
It's been forever since I have been on here! I've missed everyone.
I have systemic sine sclerosis with interstitial lung disease (ILD) and secondary Sjogren's. I have been having pain in my esophagus for years now. It is a dull, constant pain and it is really affecting my well being.
Do you think this is ILD related or GERD related? It is not heartburn but maybe it is the fact that my esophagus is a little abnormal. It hurts when I breathe and did I mention I am so fatigued? Can anyone relate and offer any insight?
I want the pain to go away! Are there pain medications for this or do we just live with it?
I am still on Cellcept and am assuming I am still stable. I go to see my rheumatologist next week for pulmonary function tests (PFTs) and an ECHO. I have an upper endoscopy coming up as well.
Thanks,
Jennifer

I am positive antibody th/to. I just read that this antibody has a poor prognosis along with severe lung disease. No surprise about the severe lung disease, but has anyone else read that it has a poor prognosis? Four years of research and this is the first time I have read this.
Thanks,
Clem

I am concerned about this also. I have disability through an insurance company, although I was also approved through social security in 2005. I can't receive SS disability due to not paying into it for over 5 consecutive years, although I could have received Medicare if I needed it. Does anyone know what my chances are of losing my status? I am stable, no miracles here, but I still wonder.
Clem

Barefut,
I have been on and off Cellcept too, stopping cold turkey many times. I've not noticed anything odd happening. I sure hope you can get this figured out.
How low are you all's blood counts while on Cellcept? Mine are on the low end of normal. I must be lucky.
Do ya'll take an iron supplement?
xo
Clem